Planning for future care

If you or a loved one has been diagnosed with lung cancer, you may unexpectedly be in the position of needing to think about the future. For some people, lung cancer can be managed for many months, even years. For others, it can have a more significant, and more immediate effect on their health and lives.

Either way, questions about future treatment and care are important and, in many ways, asking them sooner rather than later can be a good thing.

You may want to talk about what happens if the cancer spreads and can no longer be controlled, and the possible benefits or otherwise of having treatment such as chemotherapy or radiotherapy. While these treatments can improve quality of life and give some people more time, you may experience some unpleasant side effects or spend more time attending hospital. These can all be difficult things to weigh up.

If you become very unwell, medical staff may need to know if your wishes include that they carry out potentially life‑saving measures.

The COVID-19 pandemic may have brought these questions more to the front of your mind. Certainly, more healthcare providers may encourage you to think about them before or during your treatment.

If you are coming to terms with a lung cancer diagnosis, the idea of thinking and planning ahead may be extra challenging. Considering life and death situations for yourself or a loved one can be difficult and very emotional.

Deciding what matters to you before your health changes or any emergency arises will give you more time to talk things through with your family and loved ones. You will be more confident about your own views and wishes and it will help those around you understand them too. Your medical team can also answer some of the questions you may have about your illness and how things may develop.

Helping you to manage if your cancer becomes worse

Patient in discussion with doctor

You will still receive the medical treatment and care that you need even if you decide not to have cancer treatment such as chemotherapy or radiotherapy, or you have decided not to be brought back to life (resuscitated) if your heart stops.

Throughout any illness, from the point you are diagnosed, you can expect pain management and other treatments that help you to reduce symptoms and keep as well as possible. This is part of a range of treatments and care collectively called palliative care. This type of support will continue throughout your cancer journey and become part of any end‑of‑life care you may need in the future.

An advance care plan (ACP) is a way of formalising in writing the decisions you, your loved ones and care teams have reached. Your ACP will be kept on record and influence how and where you are cared for if your health gets worse. Another way of making sure people know your wishes is to write an advanced decision to refuse treatment (ADTR). It too can be held on record if you decide to have no further anti-cancer treatment. For some people, staying at home for as long as possible is important. For others, being in hospital may be necessary because of the type of care you need, or perhaps because it may help reduce the anxiety of those around you may have about managing to care for you if it is difficult for you to get in and out of bed or use the bathroom.

Health care professionals will be as sensitive as possible when starting conversations around your wishes about what they should do if your heart stops. If you decide against their trying to start your heart again, it will be made clear in your medical records and to anyone who needs to know, that your instruction, in the event of your heart stops is “do not attempt cardio-pulmonary resuscitation”.

This is a difficult subject and sometimes communication around it is not easy to time well, or not managed in a way that makes you or your loved one feel comfortable. Generally, though, you should have time to consider and decide what is right for you.

This is a form that doctors fill in and sign to be kept with your medical records. The form is often referred to as a “DNR” or “DNACPR” order. You will be involved in deciding what is in the form.

It makes clear that you or your loved do not wish to have medical intervention to revive you if your heart and lungs stop working. This decision should be followed in the event of a 999 call if you are at home or if you take seriously ill while in hospital.

Keeping people alive and well is the normal priority for medical care. It balances the benefits of treatment and care with possible risks and harm.

Life-sustaining interventions, such as cardio-pulmonary resuscitation (CPR) and ventilation (where an air tube is passed into the lungs) can be risky. While they may bring someone back to life, It may also bring them back to a quality of life they would not want to have. If someone is already significantly ill, perhaps even with multiple illnesses (sometimes called comorbidities) or already physically fragile, they will almost certainly be even more unwell or fragile after resuscitation.

Resuscitation is about recovering heart and lung function after someone’s heart stops. The more unwell a person is, the less likely it is to be successful. If their heart and breathing have stopped for a prolonged period, their brain, lung or heart function may not recover at all.

CPR can be a physically invasive process and hard on someone’s body especially if their cancer that has spread to their bones making them weaker.

There is a lot to think about when deciding if you want someone to attempt CPR on you or put you on a ventilator if your heart and lungs stop working. Take as much time as you want to look at the pros and cons for you, and talk it through with your doctor, lung cancer nurse specialist, your family and your loved ones.

The person with the cancer or other life‑limiting illness is most important. Wherever possible, their preferences and views will influence the decision.

If you are acting on behalf of a loved one who is not capable of making the decision, a power of attorney may be necessary. There are different kinds of power of attorney for someone’s health care decisions and/or financial affairs.

There is a lot of advice about this online and guidance varies depending on where you are in the UK. It should not be an expensive process, though some legal input may be required.

To set up a power of attorney, the person needs to be capable of making that decision. This may not be possible if someone has dementia, advanced cancer affecting their brain, or an impairment of their thinking and decision making.

You may have views about what is in the best interest of your loved one. Sometimes within a family people may have different views, depending on their faith, wellbeing, values and life experience. It can be difficult to accept that someone we love disagrees with what we think. When the person you care for has the capacity to decide themselves, their perspective will have priority.

If someone becomes critically ill suddenly, before they have considered what care they want, it will be the doctor treating them at that time who ultimately decides what is in their best interests. In making their decision, the doctor will take into account what has caused the person’s heart and lungs to stop working as well, the likely success and possible risks of CPR, as well as the personal situation of the person who is ill. The best way to avoid this situation is to have your wishes made clear in advance.

What if my views change or I am unhappy with the advice of my clinical team?

It’s not easy to make decisions about how you would like to be cared for at the end of your life. Your medical team and others involved in your treatment and care understand this. They are there to help with advice and guidance. If you are needing some support, speak to your GP, cancer doctor or lung cancer nurse specialist.

If you are unhappy with a decision taken by a doctor, you can ask to speak to a different doctor or clinical advisor, or speak to the NHS Patient Advice and Liaison Service (PALS), an English National Health Service body created to provide advice and support to NHS patients and their relatives and carers.

Whatever decision you make, you can change it later if your situation and views change. If you have completed a form about your future care planning, make sure it is updated on your medical records.

Some people may find it helpful to get in touch with their local hospice for support, if they have one. Hospices can be where people go for pain management, stress management and other services. They provide many services during and after cancer treatment, as well as end-of-life care.

They can be a great resource to help people with their daily lives while managing a long‑term illness. Their services are for people with cancer and other health conditions and also for the families caring for them.

Other things to think about

Talking about death and dying can be awkward and scary. It’s just not something we do and can feel insensitive or even clumsy when we try to put our thoughts and feelings into words. We can worry about how other people will react and be afraid to hurt their feelings or make them feel uncomfortable.

The NHS, cancer charities and hospices all provide support and resources to help you, your loved ones and others who care for you. They can help you to start important conversations about planning what you want.

Some people find it easier to write down their thoughts and questions as a way to start things off. It’s a useful way to make sure you manage to cover everything too. Thinking about what matters to you is important. Asking any questions that might be worrying you, for example about managing pain or breathlessness, or a range of other issues can help you reach your decision and state your preferences.

If you or someone you care for is affected by a life-limiting illness such as cancer, some of the important things you may want to talk about include sorting out financial matters (insurances or banking paperwork, for example), planning a funeral or making a will.

Further information and advice